Friday, February 7, 2014

Living Like a Refugee

I have become a winter refugee.

When my TBI first met winter four years ago, the snowfall made my head swirl so badly I could barely walk in my house. Walking outside on the slippery white stuff was completely impossible. My head swirled, my legs stiffened up, my brain unsure of where the ground was. After wall-surfing in the house for a few weeks, with the shades closed getting more dizzy and depressed, I realized I had to get out of here. This stress was not a recipe for healing.

I have never been a big fan of Vermont winters. I grew up in San Francisco, and living in the snow has always felt like a foreign country to me. Five months of it feels like living on a foreign planet. I have never felt comfortable walking on icy sidewalks. So I am not upset about missing out on the winter magic, that is a blessing. But I am upset about leaving my youngest child for a large chunk of the year. That is a painful, heart-wrenching loss.

Every year I question it. Can I stay? Am I just being a winter wimp? I feel guilty. Every year I get a few days of snow to re-confirm that I have no choice. What is it about the white stuff? The ground is white, the sky is white, and I start to stutter and stumble like I did four years ago; my son urging me "Mom, you have to go. I will be ok. Just go!".

This winter, I was determined to test myself and walk a half mile home. I had my trekking poles; I should have been able. Each block got harder and harder. Exhausted, slowing to a snail's pace, and unable to see well, with my visual field narrowing to a pinhole, I refused to give up. Finally only two blocks from my destination, I could go no farther. My brain was so scrambled, I could barely figure out how to call my daughter for help. She found me hugging the street post for dear life, unable to move or figure out where my legs were, and done for the day. "Where are my legs?" was all I could mumble before I fell asleep. I am not just a winter wimp. Every brain injury is different. This is mine.

My theory is that my brain is already working so hard to understand where my body is in space, that winter boots don't offer enough tactile information, while whiteness doesn't offer enough visual information. It is the same in a white room, bathtub, or a bright sidewalk. My broken optic nerve can't translate the visual information to my brain and it is as if I can't see. My brain gets even more strained and every other function just goes to pieces. I do much better in vibrant colors of summer.

My neuroscientist cousin in France immediately understood it and learned about this in her training, but in this country I am treated like I am making this up because I don't like winter. I would love to see the documentation on this and have been unable to find it. Does anyone have it? If so, please add it to the comments below for everyone to share.

It is a strange life I am living. I rent out my home for the winter, and spread myself among my parents and whoever will adopt me. I keep moving, trying not to overburden anyone. I would like to go home. Enough of living out of a suitcase like a gypsy, waiting for it to be safe to return to my life! And what do I do in the long term? Move? This does not appear to be improving.

This brain injury has taught me to take care of myself at a whole new level. It has taught me that nothing, nothing, NOTHING, is more important than health...  which includes emotional health and happiness. Sometimes that means making courageous and unconventional choices with our lives.

Monday, January 27, 2014

Marking Time

It is New Year's Day. (At least it was when I started writing this, so I had better get it out while it is still January!)

Every year of my adult life, I have spent the new year refecting upon the growth of the past year and setting intentions for the upcoming year. At least I did that every year until a TBI twisted my head on differently.

In the chaotic swirl of a brain injured mind, this becomes irrelevant or impossible. Irrelevant because because we have lost a linear sense of time. Time is just now. There is just this eternal moment of NOW. Impossible because when I look back on a year, cutting through the confusing swirl of jumbled memories and making sense or order of them, is like trying to reflect upon the color of a fruit flies eyes while watching a swarm of 500 fruit flies buzz around you. We just can't focus long enough or filter what is important and what isn't.

My New Year's reflections have been missing in a fog for these last three years. So when I sat down to reflect this year, I got a surprise! In another marker that the fog is lifting, I can actually find a theme to last year. 2013. It was my first year of living independently with a brain injury.

I don't know what is more exciting, that I survived a year of independence or that I found the clarity to notice.

2013 truly was a big, scary year, and I made it over this hurdle.
I was terrified to be on my own. How do you survive, let along thrive if you can't drive, ride a bus or train, look to cross a street, walk more than a mile, and have fog for a brain? I live alone with my son, and my family lives 3000 miles across the country.

Everyone I know with a brain injury lives with a spouse or family. I have learned that that safety net makes all the difference between thriving and flailing. I can look and feel downright normal when I am tagging along with someone else who can drive.

By myself, everything feels overwhelming, failures build on each other, I barely leave my house, and struggle with anxiety and depression. Life is simplified to the barest necessities. Getting food is such a challenge, I mostly skip it. You could say it was a failure year because I certainly didn't thrive, or a success year because I survived and am still alive, and I have lost all my TBI weight gain. Maybe the judgement isn't the important part.

Now I know I can survive on my own even though it is super hard. That information is invaluable, that is the important part. Learning about ourselves and accepting ourselves is the important part, not the judgement. Maybe judgement is over-rated.

It's funny how at the end of the year or the end of the day, we look back and judge ourselves. How often do we look at all we did not accomplish in our day? How often do we focus on our failures and miss our accomplishments?

I have learned to count my accomplishments and celebrate every little one. I intentionally focus on what I did do more than what I didn't do, and where I succeeded more than where I failed. Like taking a good photo, life is all about what you focus on. Focus on what lifts your spirits! I am calling 2013 a success.

P.S.  Since I've got my New Year's mojo back, I am also setting an intention for 2014. I hear-by publicly declare that I will have a first draft of my book, "Brainstormed, How I Lost My Mind, and Found My Heart", done by June. It is my story mixed with educational information. It has brain injury, romance, and travel. Think Eat, Pray, Love meets My Stroke of Insight. I have an unbelievable story, the book is coming along, and it is going to be good!

Sunday, November 10, 2013

Inside those While Vans -Part Two

Last month, an elderly woman boarded the SSTA van and said to me with a sad sigh, “it is so hard being a shut in”.  I looked right at her replying, "I couldn't agree more".

I hate it. It is absolutely crushing to lose once independence. Of all the losses since my TBI, this is hands down the hardest. Being stuck in the house for months and years is like slowly chocking to death. Humans need each other.

Startled out of her emotional state, the woman did a double take and stared at me “Oh my gosh. You are half my age. Why am I complaining?” 

In the conversation that followed, I shared “I have lived more in my first 46 years than most people do in 90. I've already lived a full life." It was a humble sweet moment where two human beings help each other shift from despair over what we don't have,  to finding gratitude for what we do have.

I really have lived a full life already. I have backpacked through eight European countries, spent six months backpacking through Alaska, stalked grizzly bears, kayaked remote islands in Baja, swam with wild sea lions and dolphins, been thirty feet from a gray whale nursing a newborn, rock climbed Yosemite, helped Youth at Risk across the country transform their lives, created an award winning documentary about said Youth at Risk, zip-lined, birthed two children at home, been a single mother, attended forty births as a doula, and as a hypnotherapist, helped  nearly a thousand people live more empowered lives. I intentionally did anything I was afraid of. I wanted to exercise my courage muscles. I was afraid.... and I did it anyway.

I was not on the sidelines of life, I was on the playing field. Now I sit on the sidelines... watching the players on the field. I now face a life where I wonder if I will ever feel comfortable walking down a busy street or traveling again. I miss participating: being able to go to parties, be in a crowd, or a concert, drive a car, ride a bus, travel, kayak, hike, most of all, I miss dancing. So if you're sitting on the sidelines of life, please don't wait. Get on the field! You don't know what tomorrow will bring. There is no time to be putting off living one's life and following one's dreams. 

Being able-bodied is a temporary condition. Whether by illness, disability of death, we will all lose our abilities at some point. Don't take tomorrow for granted.

You too will want to say the elderly woman on the van that you have lived a full life already. 

Friday, November 1, 2013

The Inside Scoop on Those White Vans

Nine months after by brain injury, I discovered Rehab....
where the occupational therapist took away my driving privileges. The experience 90 year olds fear most had now arrived in my life ....40 years early.

My world had already gotten smaller than a postage stamp, and in that moment, my entire universe collapsed in on itself. I was a single mom in a rural state, trying desperately to hang on to my last remaining role, that of "mother", and now I couldn’t drive?! How was that going to work? That would have been hard enough without a TBI but with one, life became impossible. 

Getting food meant walking a nauseating half mile to the grocery store, with trekking poles in each hand, wearing an empty backpack to carry food home in. I had mapped a path with 3 benches and 2 churches, where I could sleep along the way. The excursion took half the day. Recovering from it took the other half. After the first grocery trek, I learned what could not be transported in a backpack. We had already given up so much. Now we gave up something as basic as eggs. I spent months confused about how to get eggs. I just couldn't figure it out.

I couldn’t take busses because the shaking disoriented me too much. My world collapsed in on itself so hard, it must have fallen through a worm hole. For on the other side, I found myself in another universe.... the strange foreign universe of Special Services Transportation (SSTA) vans. These are the white vans all over the roads, that you never notice until you start using them. I was saved! 

My white stallion however, was more like a white nag. I could now get rides, but they wouldn't drive my son. Every time he needed to get somewhere, we had a problem. Our lives became even more overwhelmingly complicated. I was as dizzy and loopy as if I had drunk 3 6-packs, and getting him to his appointments was a puzzle I couldn't solve. After calling a few friends, I would give up and stress out for four days, losing sleep about an upcoming appointment. Somehow, by the grace of the higher powers that watch out for us, it worked. More often than not, someone would call while I was sitting in tears, feeling helpless that he had to be at the orthodontist in an hour. Angels appeared.

When I started using the special services transportation vans I hated it. While I was grateful for the ride, I had lost my freedom. Imagine.... to get anywhere, it needs to be scheduled at least one day in advance. The drivers can pick up 15 minutes early or 30 minutes late. You have to pad each errand by 45 minutes on either end. That's 90 minutes extra per errand. If you are like me, and you are used to efficiently lining up three stops in the same area, forget it. One errand at a time or you will have to pad each one with 90 minutes. If they didn't have what you wanted at the store and you need to go to another store, forget it. If you spontaneously realize there is something you need or want to do that day, forget it. You can't. There was and still is, nothing efficient about my new life. 

I was severely depressed. I didn't know what I was doing there with the elderly and disabled people in wheelchairs who made me feel even more broken and disabled. This was a new world I was immersed in, and I felt out of place, as if there was some big mistake. They didn't know what I was doing there either. The drivers did double takes.... until they got to know me. 

Pre-TBI, I loved being of service to others. Now I felt useless. What was I doing stuck here in this van with broken people when I had work to do in the world? It made me nuts, until in an aha moment, Oprah-style, I realized that this was an opportunity to make a difference with people who needed it the most. The people on these vans had very difficult and very lonely lives. 

This was actually an opportunity I would never have had before in my able-bodied active life full of able-bodied active people. 

I began practicing just Being Love on the van. It became my new ministry. 

Adventures began.

I started to talk with people. Amazing conversations like this unfolded. 
Passenger: "I don't know where I am going. I'm scared ." 
Me: "It's ok. The driver knows where you are going. You'll be fine." 
"Driver, where am I going?" 
"The same place we go everyday David. You are going to Adult Daycare." 
"Oh. What do I do there?" 
"The same thing you do everyday David. Here we are."
Me (delivering a hypnotic suggestion): "David, you are going to have a great day here today."
David stops, and stares at me for a long minute, "Thank you very much for saying that. Thank you for noticing me." 

My heart is so deeply pierced, tears fall out. 

I wonder how many people ever see him or talk to him? A simple little connection can make such a huge difference. I used to have to work really hard doing complicated hypnosis techniques to feel like I helped people. It really is simple.

One day I was having a lovely conversation with a passenger who had Down's Syndrome, until I realized that he wasn't talking to me. He was just talking. I smiled and stopped my side of the conversation and beamed some love his way. 

As he got off the van at Daycare, he turned back around, walked toward me, and leaned in to kiss me. Before I could recover from my shock, he literally skipped off the van wearing the biggest cutest grin you’ve ever seen, like that was the biggest thrill he had ever had. The driver and I were left completely stunned and laughing all the way home. It made SSTA history. 

I'm turning lemons into lemonade.

Sunday, September 22, 2013

Peace, Wholeness, and Dignity

After missing nearly every school function for the three years since my brain injury, this year, I went to Parent Night, determined not to miss out on my child’s life any longer. I hired my neighbor to drive me there and pick me up, the expense adding to my fire and determination to be there, meet the other parents, and get involved.

The room was abuzz with parents talking, and a hundred conversations going on at once. The overstimulation and noise was a recipe for instant brain scramble and more than I could handle. I left the room, doubting my decision to come, and waited down the hallway. Feeling more than a bit foolish and anti-social every time someone walked by and told me the parents’ meeting was down the hall. “Yeah, thanks.” How long could I pretend to admire four student paintings for? Apparently 30 long minutes.

Finally, the noise dimmed down, the meeting was beginning. This was the cue I had been waiting for, and I walked in, wearing huge dark glasses and balancing with my trekking poles. The only entrance was in the front of the room, there was no hiding. The entire faculty and 150 parents watched me enter. The emotional stress of all those eyes staring at me, and all the psychic stress of all those thoughts coming at me were enough to put my brain into complete overload. The circuits went down. I was completely lost and frozen. I had no idea where my body was or where the floor was, I stepped into mid-air and my foot fell through it, like stepping down a stair that wasn’t there. I stumbled and then froze awkwardly, unsure where my body was. I had no idea how to move. Time froze with me in that eternal moment. I always sense time freeze when the shock of my injured brain dawns on people. This time it seemed multiplied by the numbers of people watching me.

In that eternal moment I could see through every person there. I looked at the crowd and saw that the room was equally divided. One third of the crowd was absolutely terrified by me, and at a loss for words. It was a look I had grown accustomed to. I represent the vulnerability we all have to brain injury and that horrifies people... me included. One third of the crowd was in judgement and disdain, wanting nothing to do with a weirdo like me. The remaining third were full of kindness and compassion and were ready to jump to help. The kind faculty saved the awkward moment, dashing towards me offering assistance and bringing chairs. It took three teachers to get me to a chair four feet from me while the entire parent body stared. This wasn’t the kind of “being a presence at my son’s school” I had in mind.

I should have been embarrassed and mortified. I should have wanted to run and hide. Here’s the amazing part: I didn’t. I would not have minded if that frozen moment actually did last forever, because in that moment of eternity I realized that I was at peace with me. No one else in the room might be, but I was. This was the moment I realized I had finally learned to accept this new me. There was peace in my being and a joy in noticing that not only had I learned to accept the new me, it was a deeper acceptance than I may have ever felt. I felt whole. I could have stood in that moment forever.

You see, the old me would have been concerned tonight about not knowing anyone, dressing right, looking right, saying the right thing, and needing to fit in. The new me does not have the mental energy or ability to have those concerns. I am concentrating on how to walk and how to see. That keeps me in the present moment, and in the eternal moment of NOW, there is no energy to waste on such silliness. The new me knows that I am different, I can’t fit in even if I want to. There isn’t even any point to trying to be like everyone else. I am free from that human plague: the deep desire to fit in. Not that I don't have the desire, I just don't have the ability, so I can't waste energy on it.

Later that night, in the math classroom, a geometry problem was posted on the board. The math teacher called on me to read it out loud. Of all the parents, he called on me. I sat there for a minute, trying to make sense of the bouncing hieroglyphics on the whiteboard. Florescent lights, bright white, and my visual processing don't get along anymore. The harder I tried, the more my brain couldn't translate the squiggly lines into any meaning. Long silence. “Um, I can’t read”.
He had called on the wrong mom. Trying to hide his discomfort, he kindly read the problem for me, and then asked how I would proceed. I had no idea what he was talking about.  My brain was not processing information right now. Another long silence. “Sorry, I don’t understand numbers either.” 

I had just admitted to the parents of my child’s classmates in this highly academic school, that I am an adult who not only couldn't figure out where my body was a moment ago, but who often can not read or understand basic numbers. Great. What’s a girl to do? Run and hide and never go out in the world again? Or hold your head high. Sometimes I run and hide. Going out takes courage. Always I chose dignity. I’ve had lots of opportunity to practice dignity in the last few years.

I have learned to carry myself with dignity in the most undignified moments. I have learned that dignity comes from deciding that loving yourself is more important than caring what other people think. I have let go of the curse of perfectionism, and embraced that being human means that you are an ever-evolving being and that you are not supposed to be a perfect finished product. We are never done evolving. And we are all imperfect, despite the image we portray to the world. Maybe our imperfections are lovable too.

I am moving forward, out of the house and into the world with dignity. Because dignity comes from the inside regardless of our incompetencies. Dignity is an inside job. It comes from a decision to learn to love and accept ourselves just the way we are, warts and all. If I can do it, so can you. Hold your head high. You are good enough, just the way you are, and that knowledge will make you whole.

Monday, September 2, 2013

I'm Three!

This summer I passed my third anniversary. When you acquire a Traumatic Brain Injury, you also acquire a new unforgettable date. Added to your annual markers of time (birthday, anniversary, and Christmas) is your TBI anniversary.

Survivors honor that significant date with a strange mix of melancholy, and reverence. 

This is the date that we learned that no matter how smart, or witty, or hard we try, we do not control life. That illusion of control is forever shattered, and deep humility takes its place.

It is more like a “death date” than a birth date. We all have the day we will die, that we pass every year and we don’t even know it. Having a TBI, we actually know our death date. On that date the person we knew as “me” died, and a complete stranger with the capacities of a newborn showed up in its place. We became a newborn baby all over again. Dependent and incapable, a stranger to ourselves and to our families. Like any newborn, it takes years to get to know this new person. We obsessively observe ourselves the same way we once observed our newborn babies for clues to who this person is.

Among my brain injured friends, I have seen process unfold like the stages of grief. The first year: sheer terror and confusion interspersed with a heaping dose of denial. “I don’t have a brain injury!” The second year:  more terror, and depression and despair as the un-ending reality begins to become apparent. “I have a brain injury and it’s not going away.” The third year: beginning acceptance and rebuilding a life with what you’ve got left. “This is my life. Now what??”. Now I understand all that I can't do, so what can I do?

Past my three year mark now, I am improving enough to start seeing a world beyond TBI. I can see myself re-joining the world one baby toe at a time. I can now imagine a future worth living and am grateful for my constant intense focus of the last three years "just keep your body alive and don't let the depression drown you". Not easy for someone as seemingly drunk, disoriented, and visually impaired as I am. I have kept my body alive long enough to see the light.

I feel like a toddler, nervous and excited to be off to pre-school and to see what the future holds.

Wednesday, June 26, 2013

Recipe for Disaster

“I am terrified of cooking now”, I told a friend last year. “Why? You are a great cook!”. "I am not afraid of people judging my cooking, I am afraid of the act of cooking." The positive side is that by avoiding cooking, I have avoided serving Alpo to dinner guests like a friend with a brain injury once did.

I used to be a good cook, and cooked dinner for my family every night for 20 years. I was a foodie. I grew up in a french house where food and meals are the center of life. My mom had a french restaurant in San Francisco and I was waiting tables by the age of 14, and prep cook by 16. I have every restaurant job there is from dishwasher to sommelier. Post-brain injury, I never cook. Cooking creates a state of high anxiety that always ends in exhaustion and irritability. I wasn’t sure why cooking was so terrifying until Vision Therapy showed me where I was having difficulties. I has taken almost three years to break it down. Finally I understand!

First, cooking requires decision making and planning. What will you make? That is an executive function skill of anticipating and planning for a future moment. My mind goes completely blank and I don’t know where to look for an answer. I know it’s in there somewhere! But how do you get there from here?? I dunno. The neuro-connections are missing.

Second, my eyes don’t converge at a distance of the kitchen counter or closer. When I look down at the cutting board, it takes a lot of work to not see double, and that constant strain exhausts my brain, eventually rendering it into jello.

Combine that with my hand-eye coordination being off an inch or two, and skewed depth perception, and you have a great risk of sliced finger for dinner. Cutting the actual vegetable not myself requires tremendous focus and concentration.

Next mix in a lack of fine motor skills. My right hand feels like a club and is very clumsy, so spillage happens, and a dash of spice becomes ¼ bottle of spice, not to mention what lands on the floor.

Now add a touch of multi-tasking, because that what cooking requires. You are always chopping vegetables when water is boiling or chicken is cooking. Multi-tasking with a TBI is like juggling way too many balls in the air. It doesn’t end well.

Now throw in a large serving of not being able to move your eyes without complete dizziness and disorientation, and mix with the least amount of spinning around between sink, stove, and refrigerator necessary. Which if you have never noticed, is a LOT! Now you are completely drunk. (Remember don’t slice your finger.)

Now toss in a pinch of your kids trying to talk to you while you do all this, and try not to scream or cry. ....They know better now.

Finally top it off with memory issues and you will forget all about that pot on the stove. “Everything Brulee” is your new specialty unless you have bungee corded yourself to the stove, like you learned in Occupational Therapy.  

TBI Cooking:  It’s an interesting recipe for disaster. 

I think I will try it and watch those neurons grow.